Dying in America, or How to Become Completely Invisible

There is no guidebook or set of rules for us to follow; there is no concrete “American” etiquette around death.

We were sitting across from each other in a red vinyl booth of a casino diner, having a breakfast of eggs and toast. My mother wore her vibrant golden-blonde wig that mimicked the hair she had chopped off not long ago during her first round of chemo. Our waitress was a jovial middle-aged woman who felt like a lifer there. She had a giant mane of curly brown hair that looked like it belonged in an ’80s sitcom, but she complimented my mom on her more conservative locks.

My mom leaned forward with a sly look in her eyes.

“Thanks. It’s actually a wig.”

A look of understanding spread across our waitress’s face.

“Good luck to you in your journey! You can fight this! You just got to stay positive. I am a Stage III breast cancer survivor. That was the hardest two years of my life, but I’m still kicking and glad to be alive everyday.”

We nodded. We smiled. We were too embarrassed to admit the truth to her. My mother had pancreatic cancer. The five-year survival rate sits somewhere around an uncomfortable 7%—the only cancer with a five-year survival rate in the single digits, in comparison to 90% for breast cancer. There is no surviving. There is no fighting. There is only dying.

Everybody dies. That is the one definite, concrete fact of life. It’s always going to end. We all know that on a logical level, yet almost everyone I encountered in those years denied it completely. Ever since my mom was diagnosed, no one had the guts to look her in the eye and tell her she was dying. No doctor, nurse, family member, support group attendee. The party line was always the same as our well-meaning diner waitress: You can fight this, be a “survivor.”

This unrelenting optimism in the face of even terminal cancer is sickening and untrue. It creates an absurd situation where the dying patient seems at fault for not being optimistic enough, for not fighting hard enough. As though death is something that can only get to you if you lose—the rest of us who put on a bright smile and fight will never succumb to its grasp.

This optimism is nefarious for another reason as well—because it takes away the opportunity to talk openly about death. It deprives the dying and their loved ones from getting to share their genuine thoughts and feelings about the approaching death, an important step in eventually accepting death. Instead, optimism closes the door abruptly on any discussion of death and increases the solitude and alienation of the dying.

We nodded. We smiled. We were too embarrassed to admit the truth to her. My mother had pancreatic cancer.

Months later, we found ourselves in the ER. Our oncologist trained us to report there for any fever over 102. The ordinary triage of hospital waiting rooms does not apply to you when you have terminal cancer. My mother was rushed almost immediately to the front of the line. We sat in a little examining room on the main floor, where we were greeted by a nurse. He was a chubby, balding young man and he was hilarious, reminding us of a small-town version of Patton Oswalt. He started asking questions and taking her medical history and was shocked when he got to the point in her chart that said she had pancreatic cancer. It was like a small bomb had gone off in the room. All of the gaiety ceased for a minute and he began to look at my mom like she was a walking corpse. He soon regained himself and went back to the laughing and pleasantries, but that second was enough. I saw what outsiders thought of my mom. It was like they regarded her as someone in a liminal state between life and death, someone with an expiration date stamp emblazoned across their forehead. I sat in silence, not exchanging any more jokes with the nurse.

This was the other reaction to terminal illness: terror. At least it felt more genuine than the talk of survivors and fighting the good fight. At the root of both reactions was a discarding of the individual completely: the impersonal nature of both of these reactions shows a lack of consideration for a unique individual with thoughts and feelings, going through a genuine experience and in need of support. Instead, no one knows how to react to the dying. People are unsure how to engage, so either they don’t, or they do it in a haphazard, unsustainable way. With my mom, old friends would tentatively reach out and invite her to one lunch to catch up, only to never be heard from again. Past coworkers would send heartfelt Facebook messages and then drop off the face of the planet completely. It was like people were just putting in a performance piece of “caring about my dying friend” before they went on with the rest of their real, living life.

At the time, I felt very bitter towards all the half-hearted mourners in my mother’s life. Looking back, I realize they had no idea how to react to the reality of death, just like I didn’t. For many Americans who are not attached to any specific cultural traditions, there is no guidebook or set of rules for us to follow; there is no concrete “American” etiquette around death. Instead of this being freeing, this lack of rules or guidance leads to a failure of people to properly support both the dying and the grieving. With no rules to follow, it is up to an individual to guess how a dying person wants to be treated, and what are the odds they will guess properly? It is easier to deny death completely and erect a wall between you and the dying.

As my mother got sicker and sicker, I watched her slowly lose the ability to do any of the things she enjoyed; she was too sick to go out to eat most of the time, too sick to go for a walk in the park, or to sit at a bench at the marina overlooking the water. Instead she was relegated to her small studio apartment and a routine that consisted mostly of watching reruns of sitcoms on television and old movies, and eating simple sandwiches or fast food I brought her. Before the cancer, she had been a casino manager who spent most of her professional life small-talking with gamblers and dealers over high-stakes games, always making everyone laugh and never letting the lurid atmosphere get to her—now she was forced by illness to spend the majority of her time alone. As a lifelong extrovert, this was like torture for her and she savored the times she was well enough to leave the house and get into long, rambling conversations with anyone she came into contact with.

I was the only person regularly making the journey between the land of the living I inhabited at work and school, and the land of the dying that existed in her small studio apartment. In the living world, I was a normal twenty-something-year-old woman. I studied for finals with friends, had drinks after my shift was over at work. I carefully bought her teriyaki chicken and white rice from Panda Express (one of the few meals she could digest properly without the aid of pancreatic enzymes) and then as I walked up the stairs to her third-story apartment, I passed over the threshold to the land of stifled death, where I would watch an episode or two of Seinfeld while we small-talked about our weeks.

The whole time, I was accompanied by a sense of dread—this isn’t how life was supposed to be, this isn’t how death was supposed to be. Somewhere along the way, we have forgotten how to die in America. The truth is more complicated than that; I can’t speak to every culture and tradition in the United States, but it seems to me that older traditions and other countries still know how to respect the dying, still know that dying people are full, three-dimensional individuals, and still see death as a necessary and important final stage of life. They don’t throw away their dying relatives to ease their own terror at the thought of mortality; they don’t smother the reality of death in a warm blanket of false optimism.

Somewhere along the way, we have forgotten how to die in America.

I recently watched Lulu Wang’s family drama, The Farewell, about a young Chinese American woman, Billi, who returns to China when her grandmother is diagnosed with a terminal cancer. However, Billi’s family members in China decide to lie to the grandmother about her diagnosis so that the grandmother is able to enjoy her last days and even host a lavish (fake) wedding for one of her grandchildren. The Americanized protagonist is conflicted about the deceit and wants to tell her beloved grandmother the truth. Her uncle explains to her that the two countries view death differently—American culture takes a rugged individualistic approach and individuals have to bear the burden of grief single-handedly, whereas Chinese culture recognizes that death is a collective burden that must be shared by both family and society. This one scene articulated so much of the horror of watching my mother die in America, where the burden was hers and mine alone, but mostly hers.

Looking back, I wish we could have just accepted death from the start—embraced it as the final act of a life well lived. If we had gone on a fun trip instead of all those hours spent in chemo. If I had asked her detailed questions about her life and recorded them for posterity, like I planned to early on. If we took more time to enjoy ourselves instead of just being intensely sad, alone in each other’s company. If instead we’d had something like the big fake wedding in The Farewell. I wonder now if having a cultural tradition around death is what made all of that possible. As a secular, white American, I had absolutely no tradition to guide me through the events that were happening to me. Each stage in my mom’s illness felt like new ground that had to be reacted to, and as an individual I was at a loss about how to react to any of it in a way that didn’t make me feel emotionally exhausted and alone.

The last conversation we had with my mother’s oncologist was veiled in metaphors; all of the important notes were hidden between the lines.

“We are going to stop doing chemo because there is nothing more chemo can do at this point; it would just make you sicker and hurt your quality of life.”

Even a man who dealt in death his entire professional career was too much of a coward to be direct about death.

I wonder now how much different things would have been if instead he had said, “You are dying now. It was wonderful knowing you in this final stage of your journey.”

Instead, he erected a wall between us. Just like the optimistic waitress, the terrified nurse, and the inconsistent friends. They were all guarding themselves from feeling the burden of death, and leaving it to us. There was no way to break through this wall and have a meaningful conversation about death and the sadness and horror we felt with any of these people, no way to not feel isolated and alone on the other side of the wall.

My mother was fifty-seven when she died. I was twenty-six. Sometimes I wonder if things would have been completely different if it all happened twenty years down the road. Would I have been more mature? Would we have accepted life’s end if she’d had more time to enjoy it? I don’t think anything would have been much different, because our lack of traditions would remain the same. We would be trapped inside this rugged, individualistic framework, without any traditions to guide us. In this vacuum, the people in our lives and the people we encountered had reverted to what was easiest for them; denial, terror, avoidance. Anything to erect a wall between them and death.

I’m not sure what the answer is. If there is any way to tear down that wall. I try now as an individual to reach out to people, to not let my terror of death or hard conversations stop me. I realize this may be difficult or impossible for people who have never experienced their own griefs. I can’t help but think that the real solution might be collectively deciding on a cultural script for those of us who don’t have one—concrete rules and expectations set up to help the dying and their loved ones, and to help individuals navigate the complexities of death. In the meantime, we are stuck fumbling, writing the scripts for ourselves moment-by-moment and hoping they are enough.